Tuesday, August 31, 2010

(Karen gets on the elevator, already occupied by a very tall, very lean man. He leers at her, ostensibly looking her up and down. Her discomfort and "C'mon 24th floor!" thought-bubble are nearly palpable.)

MAN

(locking in with intense eye contact)

Sooo. You're on an insulin pump.

KAREN

(confused, but grateful for familiar territory)

Yes. Yes, I'm on an insulin pump.

MAN

(still staring, still unnerving)

I'm diabetic, too.

(pause)

I don't have a pump.

KAREN

(wondering if he's interested in the pump or judging)

Uh. Yeah? And are...you're on shots?

MAN

Yessss. The poor man's pump.

KAREN

(feeling incredibly guilty, like she was showing off)

Oh. Um. Well, I just started last September? I was on shots for years before that.

Monday, August 30, 2010

B and I were headed upstate yesterday morning for an overnight family outing. We piled into our little Zipcar and hit the road at the bleary-eyed hour of 7:30 for the drive. Somewhere in Queens, however, my usually-silent little friend spoke up:

Dex: BEEEEEEEEEEEEEP, buzz buzz buzz

Huh. The screen was completely blank. Had I sat on it and accidentally shut it off? I restarted, heard the familiar shrill initialization shriek, and kept on driving.

Dex: BEEEEEEEEEEEEEP, buzz buzz buzz

Um. Okay, crankypants. Maybe I'm out of range or something? So I hit clear, and then stuck him between my back and the seat.

Dex: BEEEEEEEEEEEEEP, buzz buzz buzz

Time to call in reinforcements. "B, can you please see what the hell Dex is screaming about?"

Now, neither of us had ever seen this screen before and, as I was going upstate for less than 48 hours, I hadn't packed my instruction book. So! Time to call Dexcom for translation services....survey says: Dex was now the dearly departed. (Sadly, no results from the autopsy will be forthcoming.) Within 10 minutes, our friendly Dexcom customer service rep had put in an order for a new receiver to be delivered to my office.

This should have been a happy ending, I know this, but I was completely stressed out. How was I going to do the next 8 hours of grazing without that receiver by my side? I wouldn't be able to re-up until Tuesday afternoon at the very earliest - that's days of missing data, and heaven knows how many unnecessary (and unaddressed) issues with basals or bolusing or any of the other million things that can go wrong in a day with diabetes. And all right smack-dab in the midst of my attempts to have the tightest numbers I've had since high school!

I felt stranded and a little exposed - like being in the middle of a dream and realizing you're not wearing any pants. And that upset me. How reliant have I become on this little piece of technology? I've only had it 7 months, and yet I started panicking the minute I had to face the idea of not having it. What does it mean for me that I depend so much on it? That I don't feel comfortable or at ease when I'm not "plugged in," that I find myself reaching for it when I'm sleeping or heading to the bathroom, checking to see where I am and to make sure Dex can see me?

As for the actual D, I did what anyone would do, of course. I tested a bit more and tried to keep well on top of everything. My BGs seem fine (those snapshots on my meter, naturally - who knows about the in-betweenies!) for the most part, and I'm really looking forward to being in the office tomorrow morning to start another sensor. In short, this too shall pass.

But I can't stop thinking about my reaction to Dex, Sr.'s death. I'm reliant enough on insulin, Synthroid, my pump, my glucose tabs, all of those things that HAVE to be taken. Do I really need to be dependent on the extracurriculars, too?

Wednesday, August 25, 2010

B: when karen locks it down, karen locks it down. i feel like you should send your graphs with a note that just says "what's my name? fuck YOU! that's my name! you see this graph? this graph cost more than your car!"...because the world needs more diabetes-related references to glengarry glen ross.

Monday, August 23, 2010

Last Monday, I had an appointment with my CDE. As I'm sure you know, such an appointment comes with a little baggage. Not only is she the recipient of all my food/insuling/BG logs (insert dirty, scowling look here), she's also the person I rely on for basal tweaking and nutrition information. I haven't been so thrilled with this interaction as of late, so I'd been dreading the visit. And I'm talking the kind of sheer dread that had my BGs hanging out - sticky, unmoving - in the 180s until dinner time.

I came armed with logs and Dexcom graphs. She - once again - lowered my frakking basal rates. I - once again - felt confused and disappointed, since I knew that lowering them would result in higher average blood sugars for the next three days. She said stay the course, try these new rates, and send my logs in on Friday - she'd share them with my endo, and maybe I'd get my coveted little head pat after that. So I listened to her. After all, she's the professional, right?

Fast forward to Friday. I send her all my logs and this email:

Attached are my logs and Dexcom graphs since we saw each other on Monday.

The two things of note are the BG mountain on Thursday (which is a correction mountain that's the direct result of the graham crackers I overtreated with after over-bolusing for the pasta - I give myself an F and declare to only treat with juice for the rest of my life now) and the weird jump I had last night between midnight and 4 a.m. I had a horrific nightmare that woke me up around 3. I got up, got a drink to shake it off and went to bed. 30 minutes later, my high alarm is going off and I'd jumped from around 80 to 140. Have you ever heard of nightmares doing that before?! So lame!

Anyway, here they are. Please, oh please, tell me something happy!

Her response?

Ok, let’s make these changes:
Change time of 6 am basal to 6:30
Change 9 am to .35
Change 10 pm to .40

I don't know that I can accurately convey how upset I was. No mention of the endo, no explanation of why she's making these reductions in my basals (again!!), no nothing. In the end, I tried to get her to explain exactly what she was trying to achieve with these basal tweaks, and was told she's working on the early morning rather than the overnights. Which was confusing, really, since she was reducing my insulin and I hadn't noticed any lows in the early morning. If anything, I had elevated blood sugars at that time because of my getting-ready-spike. So I, again, asked for clarification. I didn't think it was odd to want to understand the motivations and end goals behind all these basal tweaks...but apparently she did. All I got as a response was "Ok, leave everything the same." Ummm. She wanted to change my basals until I asked her about it? There was a problem with my regimen until I asked for clarification? How in the hell does that make any sense?

Needless to say, I was furious. Still am, in fact. Enough so that I'm on the cusp of staging my own little revolution to reclaim my Diabetes Queendom. No one knows my body like I do. No one knows where I cheat, where I'm SWAGing, where I had a stressful meeting or didn't wait quite long enough between bolus and eating. For that matter, no one else seems to care about these subtleties. So I'm done. I'll send my logs, I'll do my due diligence, but I'll no longer passively accept changes to my regimen. It's been nearly a year since I started on the pump, and it's time I stepped up and stopped letting other people be the boss of me.

Monday, August 16, 2010

B and I have been participating together since we started dating back in 2005, and our Team Hoffmanderson will be doing it again this year (with pump in tow for the first time!). Personally, I've been active here in New York City since 2001, but it's been a lot more fun since my other half became, well, my other half. He gets really into it, and this year is no different:

For the record, I'm wearing a Halloween costume. I was a disco nap.

Every year, I look forward to reading the donation email he sends out to coworkers, friends, and family. The note is often sweet and always funny, but more than that, it's eye-opening to see his gut reaction to something that affects his life in the way it does. He can't have ownership of my disease, obviously, and is often forced to just be patient and offer support (or laughs or cheerleading or pictures of the gatos) when I need it...without being TOO supportive, if you know what I mean. He's good at it - better than anyone else in my life, truly - and walks that very fine line like an expert tightrope walker. Still, I'm never quite sure what all of this looks like through his eyes.

His annual plea for donations, the doggedness with which he pursues them, and the words he chooses (frankly, words even I - with all my knowledge and terrors of what the future might hold for me and my health - find a little on the level of "Whoa! Harsh! Don't freak people out!") give me a glimpse, though, and enough of one to realize my heart probably doesn't want to see much more than that.

I know we'll never truly understand what it's like for the other, how each of us manages life with a disease that takes up a significant spot in our little family. But I do know that we're both a bit scared, a bit angry, a bit (dare I say it?) hopeful, a lot tough...and, more than any of that, we're on the same team.

Wednesday, August 4, 2010

Being a PWD, I wish I could say I was cursing like a Brit. Alas, it's an actual bloody foot. Cue the panic:

I was in the kitchen last night and felt something under my bare foot. Assuming it was a small piece of dried cat food - realistic, as the slobby gatos are forever getting their food all over the place - I just kind of wiped my foot to the side to dislodge it. And felt a sharp stab of pain. A bad sharp stabbing that instantly set my heart aflutter.

A small shard of glass had magically appeared in the middle of my kitchen floor from some alternate evil universe...and damned if it didn't puncture the bottom of my foot. I hobbled to the bathroom with blood running down my sole, mopped up, slapped on some hydrogen peroxide, checked to see if there were any remaining chunks stuck in the new hole in my foot, and then popped a band-aid on it.

That sounds like a calm, rational reaction but the reality was far from that. I've been well-trained by endos and CDEs over the years, and so I do not take foot wounds lightly. And by that I mean I kind of spaz out, flapping my arms around, thinking "My foot! My foot! I cut my foot! OMIGOD I CUT MY FOOT!!! BLOOOOOOOOOD!!!"

Nothing is red or pus-filled today, so I'm going to just hope I got it cleaned out and everything's hunky-dory. Um. Well, and more than likely take deep breaths to stay calm, obsessively check the bottom of my foot, probably buy another vat of hydrogen peroxide, and routinely ask B look at it to make sure he doesn't see any red streaks either. Our little sojourn to Pittsburgh should make this all a lot more fun for everyone, but my timing sucks in most things.

And for the record, the wonder Band-Aid? The one that's stuck to the sole of my foot since this morning, through a flip-flopping commute to Manhattan on the Q train? Well that would be the Rite-Aid brand clear dots - the very same I use on my belly to cover infusion set holes.

Monday, August 2, 2010

I don't know about you, but right about July I start getting a little tired of popsicles. It's not that I can't have ice cream - I can and I do, but it ain't easy if you're trying to go easy on the carbs or MEF factor. (Ice cream and pizza, sitting in a tree....) Other desserts taste great, but nothing quite hits the spot on a hot summer day like some icy cold treat.

D-friendly Graham Crackers & Whipped Cream sandwich: In lieu of ice cream, press a small amount of whipped cream between two crackers, wrap in plastic or parchment and freeze! Whipped cream can be something like Cool Whip lite, or the more simple version of heavy whipping cream and a packet of Splenda.

This post also included frozen rice pudding, fruit, and soda - all of which could be sugar free and diabetic friendly. I can't wait to try it out!

Hi there.

I'm Karen. I'm a PWD - Type 1 diabetes, to be exact. I live in Brooklyn. I obsess about things. I have a husband, a darling little girl, and two cats (all awesome). I read a lot. I love coffee (a bit too much).